Spotlight On: Dr Ava Easton, Chief Executive of the Encephalitis Society

by Marianne Long

Dr Ava Easton is Chief Executive of the Encephalitis Society. She is also, among numerous other things, a global expert on encephalitis patient outcomes, an author, and a researcher. In 2016, she published her first book: Life After Encephalitis. And in 2020, she was shortlisted for ‘Charity Leader of the Year’ at the 2020 Charity Times Awards.

Dr Easton has worked at The Encephalitis Society for over 21 years. At first, she told us, it was just “a job advertised”—nothing more, nothing less. But as soon as she began to meet people affected by the condition, and their families, she felt as though she had found her true calling. “I felt an affinity, as if I had come home,” she said.

Dr Ava Easton, Chief Executive of The Encephalitis Society. Photo taken at the World Health Organization, Geneva, in February 2020—Dr Easton’s last international trip before lockdown.

The Encephalitis Society

Encephalitis is an inflammation of the brain, that is caused either by the immune system attacking brain cells in error or by ordinary, everyday infections (e.g., flu or Covid-19). It is often described as a “thief”; for loved ones are typically “robbed”, in one way or another, of the person that they once knew (either due to the after-effects of the condition or due to death). What is more, though, is that it affects 6,000 persons/year in the UK—or half a million worldwide—and is yet, at the same time, unheard of by the majority of adults.

The Encephalitis Society is the only resource of its kind delivering on support, awareness, and research around the condition. “That’s why we are so important,” said Dr Easton, “and something for Malton to be really proud of, I hope.”

The Society, Dr Easton explained, was established by a group of parents, alike in so far that they all had children affected by encephalitis. One of these parents, all of whom were from the North East, lived near Malton, and so therein the Society found its home.

The Society in a Time of Crisis

As mentioned above, encephalitis can be caused by infections, including by Covid-19. In consequence, there has been an increase in encephalitis cases during the pandemic. As Dr Ava Easton explained: “At our peak, service demand was 113% above normal. [ … ] This increase was [caused by] more encephalitis cases (caused by Covid-19) and an increase in people’s mental health issues and anxieties around various things such as lockdowns.”

Fortunately, The Encephalitis Society was able to adapt to lockdown restrictions, effectively and with relative ease. Dr Easton continued: “[W]e quickly migrated the team to home-working and set about delivering our services to our beneficiaries digitally.”

All the while, though, Dr Easton has been focused primarily on research into Covid-19, and has had an active role in a £3 million study. “While the team were driving [delivering services online] forward, I was needed more at the research end,” she said.

According to Dr Easton, the after-effects of Covid-encephalitis are not dissimilar to other kinds of encephalitis (at least on the face of it). Yet, she added this: “Covid has been, and continues to be, one of the most contrary viruses we have ever faced. Many patients are going on to experience a myriad of problems, not just affecting the brain.” In view of this uncertainty, she anticipates that, going forward, services—not excluding those delivered by The Encephalitis Society—are going to have to be “more agile and community-focused” to cope with the challenges imposed by long Covid, and the likes.

A Narrative Approach

Dr Ava Easton’s 2016 book Life After Encephalitis explores the experiences of those affected by encephalitis; it takes what Dr Easton calls a “narrative approach” to make sense of what has happened to them; and it offers a powerful insight into the condition.

Asked why such an approach to encephalitis was needed, she commented: “I felt strongly that people post-illness wanted to tell their stories. [ … ] People read the health narratives of others, often to look for similarities or differences [to themselves] and in an attempt to predict their own futures. What we say about ourselves, and how we change that in response to other people’s reactions, is profoundly important. Our narratives help us make sense of what has happened to us at times that are often chaotic and confusing.”

Beyond Now

Moving forwards, beyond now, Dr Easton expects there to be significant renegotiations, revisions, and restructurings at all levels of society, including the level of the individual. “Now that we are getting back to meeting people in person,” she said, “I am learning that some people are forever-changed, that in my conversations with people I can’t make the same assumptions I made pre-pandemic. I think there will be a lot of renegotiating in our society as a result [of the pandemic], and people are revising what is important to them.”

She is eagerly looking forward returning to global travel. She remarked: “Being a world expert on [encephalitis] means that I’m often in demand in other countries, and I’m afraid that constant Zooms just aren’t the same; and I find them very jading!”

The Society is excited for the return of in-person events later in the year, as well as for being shortlisted for three major awards. Dr Easton said: “We involved in an event called the ‘Twitter Art Exhibition,’ which is set to be curated and held in York. In addition, we have been shortlisted for three major awards: ‘Campaigning Team of the Year,’ ‘Digital Transformation of the Year,’ and ‘Digital Healthcare.’ Exciting times!”

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